Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

I have been ill with mono/EBV for over a year now. I have also had mono in the past but it was only last summer when I became so ill that I was finally diagnosed with mono. I have never recovered..I got a tiny little bit better for a while and could still attend my college classes...but then in March I again became so ill I just had to drop out. So I am not going to college or working and I get so exhausted just going to the grocery store that I feel light headed and want to come home and go to bed. I have tried to "work through it" and tried to keep living my life like my dr's have said (quote "Mono won't kill you, just keep doing your thing, just don't over do it) but I just can't even leave the house hardly anymore. I just keep testing positive for mono and EBV and no one, not even my doctor, seems to understand how extrememly indescribably tired I am all the time. My parents keep telling me to go back to the doctor but all that ever happens is they test me for mono again and it comes back positive and they tell me to rest and increase my fluids! I have been doing that for over a year now, it ain't workin' docs!
I am getting so depressed and I just don't know what to do anymore. I can't think about my future or school because it just depresses my more. The thing is, before I got sick I was finally starting to feel really positive about my life and school and my future career and was feeling pretty good until I got sick. I used to take antidepressants but the last one I took nearly turned me psychotic and made me horribly suicidally depressed so I will never, EVER put another antidepressant back into my body (I am just one of those people that respond badly to them). I have also gained about 15 lbs since I got sick because I haven't been able to exercise and all I do is lay around (I do walk on our tread mill whenever I have a "good day" and don't feel totally crappy for about a half hour, so I do get some exercise) so that's just another thing to be depressed about.
Sorry to vent but I feel so alone and scared.

The Following User Says Thank You to NatashaW For This Useful Post:
SawtoothMtns (08-19-2011)

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Sorry to hear you have been going through this, have you had your Iron level checked. My daughter has also been dealing with Mono since Sept, in April she felt real bad, we found out that her iron level was real low. But like you she still finds it hard and gets tired so easily. Vitamins, B12, omegas seem to help but as you know one little infection sets you back a lot.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

I am so frustrated..my parents are pushing me to go back to college in the fall...And I want to, but I am Sooo exhausted all the time, I had to drop out spring quarter and haven't been in school this summer. I am so tired I can barely read, and I don't know how I am going to study. I am so far now. I am sick of going to the doctor because as he said, there really isn't anything he can do. No one understands. Even the Dr's act like its not big deal.
Do I have CFS?? Is that was "chronic Mono" is?

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

NatashaW, I hear the despair in your voice. It seems like no one understands except for people that have dealt with it. I think it can take years to get over. My daughter had to withdraw in her second month from University and lost a whole year. She is still not 100% and I am not pushing her but she also wants to return to school in Sept and I will support her whatever happens. You need to have your parents on your side, can you talk to your mother and explain how desperate you are. Perhaps she can go with you to the doctor and press the issue. Have you seen another doctor to get another opinion. Do they just check for mono or are they checking for other things too. I find women doctors a little more understanding. It does seem that mono and cfs are alike, I often wonder if thats what she has too. I know you feel depressed and tired but hopefully this will pass. I think you are still young and hope you can get through this bad period in your life.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Natasha,

SOOO very sorry to hear you feel this way and are so young (relatively speaking) . I know you must feel like this is never going to end; but I think it will get better. Just can't say when.

I'm being "worked up" for CFS/ME after spending the last 2.5 years sick and after having had hypothyroid symptoms for 5 years (but normal thyroid until now). So, I'm not currently diagnosed, but do have a few thoughts here for you.

1) Get your parent's Mary Shoman's book "Living Well with Chronic Fatigue Syndrome" and beg them to read it. (You should read it yourself as well, though I know how difficult it is simply to hold a book up or to comprehend things when you're so exhausted).

2) Be sure docs have (and continue periodically) to test your thyroid (TSH, Free T4, Free T3 and antibodies to thyroid - the last is very important because it can prove Hashimoto's disease when the others are still normal). Hypothyroidism can possibly be caused by chronic disease, but can also make you feel worse (on top of any CFS/ME).

3) GET TO a specialist in CFS/ME. At least he/she can confirm or rule out a CFS/ME diagnosis.

4) Do you live in Lyme disease country? May want to also get checked for that, though there is a LOT of controversy surrounding whether there is an accurate test by anyone for chronic lyme disease. (And huge controversy surrounding the treatment of it - usually long-term antibiotics.)

5) Be careful not to hook too firmly on any one "diagnosis" before seeing specialists, as many things have similar symptoms (hypothyroidism, CFS/ME, chronic lyme, chronic mono, etc).

6) If your doc is willing, ask him/her to check your DHEA-SULFATE, total testosterone, and FREE Testosterone. (Important to get the sulfate form of DHEA - more accurate; and very important to get the Free testosterone as it doesn't really matter how much testosterone your body has - only what is "free" floating and available for your body to use). And yes, women DO need testosterone. For your age, your free testosterone should be at LEAST around 2.5-3.0. Your DHEA-S should be around 150-200. If either of these are low you might look into trying some over-the-counter DHEA supplements from your local health store (the amount you'd take would depend on how much deficiency you have).

You do NOT (I repeat DO NOT) want to take DHEA if you are not deficient. Too much testosterone can cause bad deformities in pregnancy!!!

If you are feeling poorly still, I don't think pushing yourself to get back into school is necessarily the best thing. Do you live at home and go to school in the same area? Perhaps you could start with just one class. Getting out and seeing folks again may help emotionally, but you'd need to be very very careful not to get overly exhausted (and see how you do on your "days off").

Hang in there. I'd like to keep in touch. I'll try to come back to this board more often. I'd prefer to hang out on this board since I think this is what I'm going to finally be diagnosed with, except this board doesn't appear to be very active. I know there have to be a lot of very knowledgeable folks out there having had CFS/ME before. If you're looking for me later to talk DHEA stuff, do a search, or look for me on the Lyme board.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Kali and crannie-
Thanks SO MUCH for your support. I am having a really bad day today, I am so tired I could barely take a shower. My parents are very understanding, very supportive, and very loving, but I don't think they can grasp what I am dealing with. I have just laid around the house for months, and even going to the grocery wears me out. I am super stressed about college, because at the rate I am going I won't graduate til I am 26 (or older). I want so badly to get on with my life but the thought of having to go sit in a classroom for 2 1/2 hours and even drivng to school makes me weak. I do live at home and my school is close by. I had to drop out last semester and thankfully, I got a full refund because I sent in all my doctors records but I can't risk dropping out halfway again and wasting my parents money. My mom thinks that if I just "got out more" I would feel better, but I just want to withdrawl from people.
I do have a physical this thursday. I have a WONDEFUL doctor who already tested me for thyroid problems, and every thing else on the planent practically. He is extremely knowledgeable (as a dr. should be) and tested me for all of the things that could mimic mono. I always come back positive for all of the Epstein-Barr tests.
I was thinking of going to a immunologist? Would that help? I do want to see a specialist....but whom?

I appear to be in pretty good health except the EB/mono.
I have had lots of health problems since I was 14. I had asthma, and I was undiagnosed and treated with acid reflux which was actually causing 90% of my asthma symptoms, then I had horrible problems with my sinus', which I had operated on, and have been suffering from fatigue since age 17. No one understood why I was always so tired and I do believe I have had mono since then.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Hmmmm...that's interesting. I had a horrible flu either preceeded or followed (can't remember which) by 2 months of completely stopped up sinuses due to a severe sinus infection - couldn't breath out of my nose for 2 whole months. This was the same time I went hypothyroid with the nodules. And from then on after it's in my medical record that I complained of always being sick and "never been sick so much like this before." This was about 1-2 years before the very first symptoms (though mild) started showing for CFS. Hmmmmm....

Talk with your doc about these possibilities:
(1) Rheumatologist who is VERY knowledgable in CFS, FM and other chronic fatigue diseases, or
(2) Specialist in CFS & FM

There may be others that could help, but I'd first ask about one of the above.

(Get the book I mentioned!!!)

Hang in there! We know how you feel. And, though it's tough to think in these terms, the best thing you can do right now is be sure you get healthy. School will wait. But, you need a specialists or support group who can help you figure out what your best treatment is (even if that is to rest and take supplements).

Those of us in this position have given up a lot of things. But, keep holding onto your dreams and your hope. Hope is a lifeline. Don't let go of it.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Hey Natasha,

What is in the fatigued to fantastic powder? Is there a list of ingredients?

A Rheumatologist is a physician trained specifically (and above and beyond general med) in connective tissue diseases. Connective tissue includes muscle, bones, joints, cartilage, ligaments, fascia... They also treat many diseases of autoimmunity (since many of those diseases primarily affect connective tissue). Diseases of connective tissue include rheumatoid arthritis, lupus, osteoarthritis, gout, back pain, osteoporosis, fibromyalgia and tendonitis. (Obviously, orthopedists treat some of these disorders as well).

Some Rheumatologist have extensive knowledge of CFS (primarily because of their personal interest in it beyond their medical training). There ARE physicians who specialize in treatment of CFS or ME as well as FM. Some of them are Internists, Family/general practitioners, Pediatricians, and/or Rheumatologists who have specialized their practice to this area. You can find names in Mary Shomon's book or through national, state or local CFS help groups or organizations. Or you might be able to find one from a local large city in the yellow pages under physician.

Years ago the thought (as I understand it) was that EBV was closely linked to CFS. Now, it's believed that multiple "insults" may predispose someone to or initiate the beginning of CFS. Some of these insults COULD include viruses, bacteria, elemental toxins (mercury, etc), extreme stress, etc., etc. There are MANY theories out there. So, in theory, many different things (or possibly combinations of things) could bring on CFS in someone. (And there may even be a genetic component to this that again just makes certain folks susceptible to this disorder). This is why some folks might not test positive for chronic EBV. Their CFS may have been caused by something else. OR...OUR CFS may have been caused by something else - other than EBV. We just don't know. There may be a virus or bacteria that has not even been discovered yet that infects us and causes this. (This is the "stealth virus" theory).

As for school...look at all this stuff you're learning! Life has many lessons; don't think that you have to force yourself back to school immediately just to "stay on track." Something you learn in your search for better health may lead you to some amazing career someday. Keep thinking positive (and yes, we know it's hard to do).

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Natasha, from what i have understood most people are born or soon after get EBV, CMV and HHv-6. These are all herpes viruses and 90% of the worlds population has had them. In people with chronic illnesses these viruses reactivate because your system is down, trying to fight a new problem. Like these viruses mono can reactivate due to other problems. When it comes to chronic illness science is very far behind, every thing is a contraversy. Getting misdiagnosed is very common. I have read many stories of people diagnosed with MS or ALS who ended up having chronic lyme and after high doses of antibiotics fully recovered.

To most Dr's you would be considered undiagnosed or diagnosed with CFIDS or possibly FM. In a way having CFIDS or FM is like being undiagnosed. You should ask your Dr. to also check for CMV, HHV-6, ANA, check adrenals, thyroid and diabetes. If you are dizzy see an ENT and have a test done called an ENG. The ENG will tell them if your dizziness is coming from your ears, eyes, brain or possibly sinuses.

If they can not pinpoint what is causing your problems see a lyme specialist. After two years of disabling fatigue, brainfog, dizziness and pain I was diagnosed with CFIDS/FM. I then saw a lyme specialist who tested me for 16 differant things. I tested positive for babesia. I am still skepticle, even though I have spent half my life outdoors. Keep searching and dont be satisfied until they find what is causing the problem. Go to your library and get some books on CFIDS/FM and you will notice several pages devoted to illneses that cause it. There are abot 30 differant things, get tested for all. The only illness on the list with shody testing is lyme, make that the last and see a lyme specilist.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Quote:

Originally Posted by Bothrops

In a way having CFIDS or FM is like being undiagnosed.

I was diagnosed with CFIDS/FM. I then saw a lyme specialist who tested me for 16 differant things. I tested positive for babesia. I am still skepticle, even though I have spent half my life outdoors.

Bothrops, I've noticed you on the Lyme board (as I started out there when I returned to the boards about 2-3 months ago). I came over the chronic fatigue board because I have been reading anything and everything, and because this is what my new doc (whom I really like and respect) has focused on. I am perplexed a bit about the alternative testing sites for Lyme. I've read emails between specialists arguing about the validity or non-validity of these tests and they bring up some interesting points. In reading that, as well as all the information about chronic fatigue, it often seems so confusing. There are these diseases to be treated, with different names, and no reliable or diagnostic tests, but with all the same symptoms. Some get better after several years on their own, some get better with some conventional meds in addition to various supplements, and some get better within the same amount of time on massive doses of antibiotics. Because of this, I too remain sketpical - of them all. (Although I do believe they all exist in some folks). I know I have something going on, and I know it's not psychosomatic, but I don't know what it is. It's nice to see someone else has the same feelings.

Have you gone on antibiotic treatment for the babesia? Have you felt any improvement? What other diagnosis were you laden with?

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

BoThrops...

I don't live near any woods, and haven't even been in any woods in about 7 years (LoL, I don't like the "wilderness", hey I'm suburban). Never had a tick ever as far as I know. (actually...I think I had one when I was about 5? but I was never sick). I really think that 9 years battle with bulimia contributed to my mono. I started getting very tired about age 17 but no one ever tested me for mono/EBV and everyone just thought it was depression. It wasn't until my health completely broke that I was dignosed as having mono (and I actually had to request the test! this one doctor wanted to test for for all these weird things like lupus and multiple sclerosis first, which seems stupid because why not test for the simple things first?)

I haven't been a healthy person since I was 13, I have always been mildly sick with something, like asthma, sinus infections, lots of colds, Irritable bowel, insomnia, ect.

I just got restested on thursday and am expecting my current test results back in tomorrow.

One more thing, can mono/EBV "kill" the thyroid? I have gained 15 lbs recently for no apparent reason, and I know underactive thyroid could cause thing. I was also tested for that on thurs.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Well, the theory is that these chronic infections (including EBV) tend to harm the immune system. A damaged immune system then starts going a little haywire and the thyroid can (I understand) often be involved. I was just diagnosed with hypothyroidism, but it was 2.5 years after the worst of my symptoms started getting very bad, and 1.5 years after I put on 20 pounds in 4 months without any changes to my diet or exercise.

Have you been able to conquer the bulimia? One of my theories (and this is completely my own UNSCIENTIFIC theory) is that eating disorders disrupt your body's ability to regulate insulin - esp. an eating disorder that goes on for years. How long have you been on a more normal eating (without purging) habit? If it's only been a little while, the weight could be your body simply trying to readjust its own metablism.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Quote:

Originally Posted by Kali M

Bothrops, I've noticed you on the Lyme board (as I started out there when I returned to the boards about 2-3 months ago). I came over the chronic fatigue board because I have been reading anything and everything, and because this is what my new doc (whom I really like and respect) has focused on. I am perplexed a bit about the alternative testing sites for Lyme. I've read emails between specialists arguing about the validity or non-validity of these tests and they bring up some interesting points. In reading that, as well as all the information about chronic fatigue, it often seems so confusing. There are these diseases to be treated, with different names, and no reliable or diagnostic tests, but with all the same symptoms. Some get better after several years on their own, some get better with some conventional meds in addition to various supplements, and some get better within the same amount of time on massive doses of antibiotics. Because of this, I too remain sketpical - of them all. (Although I do believe they all exist in some folks). I know I have something going on, and I know it's not psychosomatic, but I don't know what it is. It's nice to see someone else has the same feelings.

Have you gone on antibiotic treatment for the babesia? Have you felt any improvement? What other diagnosis were you laden with?

Kali

Kali I am so confused I cant see straight, confusion and eye problems are two of many symptoms that I have. Even though they found the babesia I am not convinced I did not get a false positive. I still think that what I have is CFIDS and will do so until something works. Even so, they did find the babesia and I guess I would be foolish not to do what they think is best. From the begining deep down inside I knew it would end up either lyme of CFIDS/FM from the research I did. I am also very worried about all the abx I have done.

That is a lot of abx. What will this do to me if it does not help? What if I do get better and later on in life I get an ear infection, will it kill me?

Even though my real problems started in 2003, it seems that after I had swollen lymph nodes in 90 is when my health started to go downhill. That is what lyme would do if it became chronic, but the nodes came up after a bad flu in the winter. When I became disabled in 2003 it was after back to back flus in a three week period during the summer. None of this makes sense and everything contridicts itself. Regardless, whatever it is I have seems to be in epidemic proportions. The # of people on healthboards with our symptoms is growing at a stagering rate. I think that they need to hurry up and find out what the problem is.

Re: Sick with Mono/EBV For so long...Feel like I am dying inside & giving up hope

Kali
I didn't start putting on weight until I got mono..then it came on slowly. I have never gained this much in my life (granted, I am not heavy, but I am atleast 15 lbs more than I was even when I was not bulimic and was eating normally) Maybe it is just that I havent been as active since I got mono, but I feel there is something else going on. I eat maybe 1000 calories a day and used to eat 1,600 and I weigh more now. I am waiting to see if my thyroid tests came back abnormal. I feel like my metabolism has really slowed down recently.